Future Planning for Your Child with a Disability: Letter of Intent Guide

Letter Of Intent Letter Of Intent Planning for the Future Planning for the Future Jim Jordan, jajordan725@sbcglobal.net

Purpose of Letter of Intent To Communicate their Wishes and Knowledge about their Son or Daughter with a Disability to Future Caregivers May be short term (hospitalization or long term care recovery) Long term (You die before they do)

The WHO The WHO You/Spouse-Partner Relatives that may be involved Friends Lawyer & Accountant Trust Support groups/Institutions

The WHAT The WHAT HOW CAN YOU, AS A PARENT, BE ASSURED THAT YOUR SON OR daughter will lead as complete a life as possible after your death? What can you do to make sure your hopes and aspirations are realized?

The WHY The WHY Writing a letter of intent is a critical step in the planning process. This critical document permits parents to communicate future wishes and vital information about their son or daughter to future caregivers.

Parents are the experts on their child Parents are the experts on their child No one understands your son or daughter s needs and desires better than you. If you become incapacitated or die, it is vital that future caregivers have access to your knowledge. Although not a legally binding document, a Letter of Intent is an ideal format.

Your major concern is to make sure that your child will have a happy and meaningful life. Write clearly enough so that anyone who reads the letter in the future will understand exactly what you meant.

The WHEN The WHEN ASAP! You need to have legal documents completed and your lawyer part of the team. Annual Review and Revisions

The How The How Overwhelming to consider all the pieces needed Gather all the legal documents Who will be designated representative, disperse money, do taxes, etc. IEP or ISP Residential Placement, education/workforce, social, spirituality Medical Care, Final Arrangements Care Manual The Letter (hardest document I have written) Supporting Documents Review and Revise annually or sooner

Avoid Frustrations for Designated Person Avoid Frustrations for Designated Person All Legal Documents Scanned and on Desktop of Computer AND Hard Copy at Home Provide a copy of Table of Contents to main people Original Will and Other Legal Documents in Safety Deposit Box How will they access all docs (password protected, safety deposit box key, phone # s)

Chapter 2 of Book Chapter 2 of Book Planning For The Future Planning For The Future 1. 1. Good Source for more information & template. Good Source for more information & template. 2. 2. You can use their guide or modify to meet your You can use their guide or modify to meet your needs (I modified). needs (I modified). On SDS Google Drive Folder Letter of Intent On SDS Google Drive Folder Letter of Intent Compassion & Choices Compassion & Choices - - Care and Choice at the End of Life

Legal Document Categories Birth Certificates, Social Security Cards, ID Documents Medical Diagnosis from Dr and DMH Court Guardianship Document Will Durable Power of Attorney Durable Power of Health Living Will How will body be treated/disposed of after death Special Needs Trust

Organizing and Developing Your Wishes Organizing and Developing Your Wishes What is the Prime Directive? What are Your Beliefs? What Are Your Values? What are Medical Directives? Other Dispositions? What is Your Vision of Life?

What is the Prime Directive? What is the Prime Directive? That Aidan maintains a high quality life and is able to engage in his own way to ensure that he: is healthy and can have some form of autonomy by communicating his wants and needs/is able to have basic physical abilities/physically able to engage in his favorite activities with some form of assistance/help, is happy and is able to engage in activities that he enjoys, is comfortable and wants to be with his care providers and peers, gets out into the community and be part of the scene , and shows satisfaction with his life/not exhibiting failure to thrive or checking out because he isn t able to be stimulated.

Underlying Beliefs Underlying Beliefs Science is the guiding principle guiding my beliefs, values and actions Aidan s wants and needs should be met with assistance of people and technology Aidan is experiential and personal interaction is essential Death is a natural part of the life cycle and US citizens have a hard time accepting death. We play God in that we can keep people alive with medical interventions beyond the natural order of life

Underlying Values Underlying Values Quality of Life Not Isolated but part of Society Inclusion & Acceptance with Dignity, Respect, Equality Resource Equity and Distribution Eco-Centric not Homo-Centric

Medical Directives Medical Directives DNR DNI Do not use heroic medical interventions if quality of life will be compromised Avoid failure to thrive

Other Dispositions Other Dispositions Aidan lives at home Dautel Center will be deeded house as long as this is the case. Aidan lives with others at home. Money in trust be used to enrich and engage Aidan in personal life

Your turn Your turn 7 minutes 7 minutes On the worksheet list as it would pertain to your son or daughter At least 2 Beliefs At Least 2 Values At Least 2 Directives or Dispositions One or Two Challenges for Designated Rep you have in mind

In Breakout rooms (10 minutes) In Breakout rooms (10 minutes) Have two people share their beliefs Tell person, what you would want to know regarding their belief to understand it better in the Letter of Intent Have two different people share their values Tell person, what you would want to know regarding their value to understand it better in the Letter of Intent Have one or two people share their Directives or Dispositions Tell person, what you would want to know regarding their Directives or Dispositions to understand it better in the Letter of Intent

Jim Read What He Wrote Jim Read What He Wrote To Explain To Explain Or in Document I can Provide

Important Benchmarks to consider when faced Important Benchmarks to consider when faced with tough decisions and choices with tough decisions and choices Aidan has lived a good life, experiencing many things that have enriched and challenged him. Aidan s quality of life requires him to be out of his chair and in the community doing things such as meeting and interacting with others. Aidan has outlived most trisomy 9 kids and has received exceptional care in hospital and at home. Aidan has been a change agent in St Louis s disability community regarding which individuals should be accepted into recreation programs. His legacy has been established and his life has had impact.

Aidan is totally experiential, his quality of life declines with declines in his physical abilities. He has been in a slow decline for standing and walking since 2008. Jim has seen an increase in Aidan wanting and wishing to do things he can no longer do. It is getting harder and harder to physically support him in doing these things and has taken a huge toll on Jim physically supporting Aidan. You need to consider a care providers health AND Aidan s need to participate in activities. Aidan has lived a good life, experiencing many things that have enriched and challenged him. Do not blame yourself for him becoming ill or reaching an end of life decision. Remember death is a natural part of life, I believe Aidan would accept it or discard it based on his current condition.

Write Down 3 Benchmarks to Write Down 3 Benchmarks to Consider in Decision Making Consider in Decision Making

Other Criteria to Include Other Criteria to Include Aidan aspirates and cannot have a G-Tube Aidan is Known in Maplewood Aidan s Home was designed with him in mind Aidan does not do screens, technology or TV/movies Aidan Loves Live Music

List three criteria that are List three criteria that are important to include and discuss important to include and discuss

NOW IT IS TRULY YOUR TURN NOW IT IS TRULY YOUR TURN USE THIS POWERPOINT USE THIS POWERPOINT CHAPTER 2 CHAPTER 2 MY DOCUMENT FOR AIDAN MY DOCUMENT FOR AIDAN

Contact Me by email with any Q s or discussion jajordan725@sbcglobal.net